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Facilitating Participation for Parents with Disabilities

Facilitating Participation for Parents with Disabilities
Amanda Acord-Vira, EdD, OTR/L, CBIS, Diana Davis, PhD, OTR/L
June 14, 2016
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What is Parenting?

First we are going to put up a poll. What is parenting?

  • hard work
  • 100% involvement
  • patience
  • mindful of the needs of the child
  • supportive
  • a task without boundaries

We agree with all of these. I am a parent through adoption. I was surprised, to say the least. I have teenagers and that is a lot of work. Parenting involves so many things and does not have very many boundaries. I think that is one of the challenges when trying to address this topic. There is so much to consider and it seems like it cannot be addressed well therapeutically.

Definition of Parenting

We found some definitions of parenting in the literature and the one we really like is this:

A complex role that may utilize occupations, tasks, activities and performance skills across the range of human participation and performance.

It can be simple such as being able to put a onesie on a baby, or complex as trying to develop a discipline plan to help a child understand boundaries and respect. It is also a complex social task to help a child be ready to function in our very fast moving technological savvy and sometimes very scary world.

Goals of Parenting

The literature has identified that the goals of parenting are to facilitate the physical, emotional, cognitive and social development of a child or children. I think that is the part that we found so overwhelming, even as parents with normal abilities. It can be very challenging for parents who have impairments in a variety of areas.

Parenting with a Disability

When we reviewed the literature, there was not a lot on parenting and interventions from an occupational therapy perspective.

A lot of the literature on parenting talks about individuals with intellectual, developmental, or mental disabilities. There is not a lot of information about parents with physical disabilities or parents with multiple disabilities. There is also a lack of knowledge and availability of commercial equipment for parents with physical disabilities requiring parents or their treating therapists to be very creative. This also brings in a lot of legal issues because of the high standards we place on equipment that we use with children. 

We do know, and this is well documented, that parents with disabilities frequently face a discriminatory, non-supportive society. This has really been worsened by social media where people openly judge parents. As parents we feel like every time we turn around we might be photographed or be judged. This can be very intimidating for a parent with disabilities to function. Often people assume that the presence of a disability means you cannot have children and you cannot be an effective parent.

National Council of Disability Findings: Rocking the Cradle

One of the documents that really guided our practice was, Rocking the Cradle, published by the National Council on Disability in 2012.  This ensures the rights of parents with disabilities and their children. It had 17 very detailed findings regarding the experiences of a parent with disabilities. I am not going to read them to you as they are spelled out over the next three slides. I am just going to sum up the information for you as we go through each slide.

 

Figure 1. Rocking the Cradle findings- slide 1.

One the things that comes up, and that is also going to come up when we talk about a case in which the Department of Justice identified parenting as protected under ADA, is that assessments for parental fitness are not modified for individuals who have intellectual, developmental, or physical disabilities. Thus, those parents, when assessed on those instruments, are rated as poor or unfit parents. Tools are not available to assess parents with disabilities.

 

Figure 2. Rocking the Cradle findings- Slide 2.


amanda acord vira

Amanda Acord-Vira, EdD, OTR/L, CBIS

Dr. Amanda Acord-Vira and is an Associate Professor in the Division of Occupational Therapy at West Virginia University. She is also the Principal Investigator on a Federal TBI State Grant Program with the Centers of Excellence and Disabilities with West Virginia University. She received her Master's of Occupational Therapy and Doctorate Degree in Educational Psychology from WVU and obtained her Graduate Certificate in Special Education and Traumatic Brain Injury from George Washington University. She has been involved in clinical occupational therapy practice, research and education for over 18 years focusing on traumatic brain injury. She has presented at several peer reviewed state and national conferences. She has also published several articles on brain injury and coauthored the Occupational Therapy Practice Guidelines for Traumatic Brain Injury. In addition, she serves as the editor for the American Occupational Therapy Special Interest Section for Work and Industry and is the co-chair of the WV TBI Advisory Board. 


diana davis

Diana Davis, PhD, OTR/L

Dr. Diana Davis is an Associate Professor in the Division of Occupational Therapy at West Virginia University. She received her bachelor’s degree in Occupational Therapy from Western Michigan University and her Master and Doctoral degrees in Interdisciplinary Education, Higher Ed Leadership from WVU.  Dr. Davis has 30 years’ experience in in clinical occupational therapy practice focusing on acute care intervention for individuals with acquired and traumatic brain injury. Her research has focused on return to participation in life roles for individuals with brain injuries with a recent focus on the effects of a concussion on occupational performance. Dr. Davis has co-authored several publications with Drs. Acord-Vira and Wheeler on brain injury and concussion. She currently serves as the Representative for WV to the AOTA Representative Assembly and as served as President of the West Virginia Occupational Therapy Association fin the past.  



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